By David Tuller, DrPH
A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to prevent worsening of complaints, and about distributing energy and rest (pacing), was most appreciated,” (Translations in this post via Google Translate.)
The survey was conducted as part of the process of developing a set of national ME/CFS management and treatment guidelines. According to the article, these and a few other findings about the impact of the illness were released during a recent meeting in Utrecht at the Knowledge Institute of the Dutch Association of Medical Specialists, which is involved in the guideline development process.
This process is fraught with contention, as was a similar process in the UK. To review, the UK’s National Institute for Health and Care Excellence (NICE) released new guidelines on ME/CFS in 2021, after a multi-year process delayed in part by the pandemic. The new version reversed earlier NICE recommendations for GET and CBT as curative treatments. However, professional medical bodies with vested interests in these discredited interventions have refused to accept the new NICE document. Instead, they have been throwing tantrums in the form of specious journal commentaries that recycled unconvincing and already debunked arguments.
The Dutch survey was widely distributed by ME organizations through their social media networks, as well as by the Knowledge Center for Chronic Fatigue (NKCV) at Amsterdam University Medical Centers (Amsterdam UMC). “The fact that a much broader group than just the supporters of the patient organizations has been reached is evident from the fact that 45% of the participants in the survey are not members of one of these [ME] organizations,” noted the article from the ME and Disability Support Group.
NKCV is the professional home of Professor Hans Knoop, a long-time collaborator of the PACE authors and a leading light of the Dutch wing of the GET/CBT ideological brigades. I have recently criticized a study he and colleagues conducted and have claimed proves that CBT–in the form of a program called Fit after COVID–is effective in treating fatigue following an acute bout of Covid-19. (A bit more on that study below.)
Another group, Millions Missing Holland, filed an open records request with Amsterdam UMC to find out how NKCV solicited responses to the survey. Here’s what Amsterdam UMC wrote them in response:
“An attempt was made to approach as many people as possible within the patient group by providing all patients who visited Amsterdam UMC with the diagnosis of CFS/ME with a flyer containing information about the survey. In addition, this flyer was in the waiting room of Amsterdam UMC a few weeks before the target group. For approximately 150 patients it was possible to contact these patients by e-mail from the practitioner, because it was only relatively easy to retrieve their e-mail address from the file.“
In other words, patients under the care of Professor Knoop’s center, which champions the GET/CBT approach, were presumably among the survey respondents. Even so, the survey found those treatments to be “the worst” approaches to care. I look forward to seeing the full report of the survey when it’s available.
If Professor Knoop knew the results of the survey, he didn’t inform the audience in his presentation at a recent Long Covid Congress held in late November in Jena, Germany, at least judging by the available video. Instead, he presented his recent study on CBT for fatigue after an acute case of Covid-19, insisting–not surprisingly–that it showed CBT to be effective. He did not mention, nor did the trial report itself include, the very salient fact that the study’s only objective measure—how much participants moved, as measured by wearable electronic devices—yielded null results. When pressed, they offered “dog-ate-my-data” excuses for the decision to omit this key information.
Among these excuses was the claim that physical activity levels are unrelated to fatigue and that therefore the study’s null results for physical activity were unrelated to the claim that CBT was effective for self-reported fatigue. This assertion was and is ridiculous; it is hard to believe anyone would embarrass themselves by publicly making it. The assertion is also undermined by Professor Knoop’s own presentation last month, in which his slide outlining the “cognitive-behavioural model of chronic fatigue in long term medical conditions” noted that “physical inactivity” leads to fatigue. His presentation also highlighted Fit after COVID’s “graded activity” module and its role in helping patients regain their former level of activity. A graded activity module designed to increase activity would presumably be unnecessary if activity levels were unrelated to fatigue. As always, nothing Professor Knoop writes or says on these matters can be taken at face value.
***Note: My position at UC Berkeley is supported by crowdfunded donations to the university from ME/CFS patients and advocates, among others.